Navigating Parenting, Marriage and more with MS

“I’m Tired” versus My Chronic Fatigue

I think one of the most common complaints of people with Chronic Fatigue, actual and diagnosed is that many people respond to them with “I’m tired too”. Most of these people mean well and are just trying to relate, but they do not understand the difference.

I have so many issues related to my Multiple Sclerosis and Meniere’s Disease but my top two are fatigue and cognitive decline.

Fatigue, in the sense of a chronic illness can be crippling. We don’t want to hear about how you are tired because you took your children to school, went to work and then car pooled the kids to after school activities before going home to make dinner, help with homework and getting them to bed, and on and on. Some days it takes all the energy I can muster to get out of bed and walk to my basement office to log onto my laptop to work from home. There are days, most of us don’t want to admit this because people are so judgmental, that we have to decide if a shower is worth the energy it takes to get undressed, shower and redressed. That is what fatigue looks like, not your sense of being tired after a workout or long day in the office. When you respond with “I’m tired” we may silently judge you, because telling you that what you experience is in no way like what we experience takes way more energy than we have to give just to inform you that you are mistaken.

If I am feeling extra frustrated with people I may respond with “do you have the energy to shower everyday?” I will just leave it at that, I will get a weird look and then they will drop it.

Just know, even with the best intentions, it comes off across differently to the people who suffer from bone crushing fatigue. We try, we will fake it and may look fine, some of the better of us (not me) may not even tell you how much fatigue impacts them. Chronic fatigue feels like it is slowly killing me from the inside out and no amount of sleep gives me “pep”. I drink caffeine all day, do not judge me, just to stay awake at my desk and make it through the day.